An Intimate History of Premature Birth. Sarah DiGregorio

An Intimate History of Premature Birth - Sarah DiGregorio

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about six weeks on CPAP, she graduated to a nasal cannula that delivered oxygen, and then nothing at all. At around 33 weeks’ gestational age, an occupational therapist taught us how to bottle-feed her, very slowly to avoid overwhelming her, which would inevitably lead to her forgetting to breathe and having an episode. After a few weeks of that, they took her feeding tube out. For the first time, nearly two months after her birth, we saw her face clearly, freed of the tubes and tape. One morning Amol and I came in and found her awake, her huge gray eyes looking around, as though she had just arrived—which, in a way, she had.

      Finally, she hit four pounds. Now we were waiting for the bradys to go away. The policy was that she had to be episode-free for three days to go home, and if she had one, the clock was reset. She had gone two episode-free days when she had another one, while drinking a bottle. The attending neonatologist decided that, since the brady happened only because she got overwhelmed while eating, it didn’t count. Presumably if her heart stopped while we were feeding her at home, we’d notice, as opposed to if it happened while she was sleeping, when we might not. I did not find this reassuring. I wanted to take her home, but I was terrified to take her home.

      The next day, January 27, fifty-nine days after her birth and twenty days before her due date, Mira was unhooked for the first time from the monitor that tracked her heart rate, respiratory rate, and blood oxygenation, and we were told we could go home. It felt radical, like free-fall. It had snowed the day before, and I sat in the back seat with her, barely breathing myself, as Amol drove slowly down the icy FDR Drive to the Brooklyn–Battery Tunnel, all of us retracing our steps for the first time together since the Sunday morning in November when she was born.

      OUR STORY IS like a kaleidoscope of lucky versus unlucky: The pattern shifts depending on how you look at it. We had excellent prenatal care; if we hadn’t had that extra monitoring, Mira would likely have been stillborn. Only about 1.6 percent of babies are born before 32 weeks; only about 0.5 percent are born weighing less than 1,000 grams. We had made it four weeks past what anyone would consider the viability line. But being IUGR increased her risk of death or disability to the equivalent of babies born two to three weeks earlier, 25 or 26 weeks. She was born in a hospital with a level four NICU, the best. Ours was one of the many preterm births for which there was no answer as to why the problem happened—no risk factors, no health problems, no reason.

      The incredible truth is that, from a medical point of view though not from a parental point of view, Mira’s NICU course was unremarkable, at least once she was stabilized and started to gain weight. As recently as the 1970s, she might have been simply allowed to die in the delivery room, since she was under 1,000 grams. But in the context of today’s high-resource NICUs, Mira was relatively unremarkable. She was your average one-and-a-half-pound baby whose heart stopped several times a day, who needed blood transfusions to stay alive, who needed life support to breathe, eat, and stay warm.

      When Mira was born, I felt uniquely bad at gestation, when I was actually one of almost a half million mothers who would give birth early in the United States that year. I didn’t know that our family’s private gauntlet was a small part of a worldwide public health emergency.

      For most of human history, gestation was a solo affair, and it either resulted in a living baby and surviving mother or, lots of times, it didn’t. Left to nature, most preterm babies die. In today’s NICUs, most of them survive.

      Throughout the middle and latter half of the twentieth century, extraordinarily headstrong doctors and scientists were willing to risk their reputations to argue that something more could and should be done for the tiniest babies. As a result, in two generations, we’ve gone from having essentially no treatment for premature babies to flirting with viability just past the midpoint of pregnancy.

      It’s changed the way we think about babies and our obligations to them. It’s changed the ways we understand what it means to be alive, what it means to be human, and what constitutes a life worth living. At least for the moment, it messily defines abortion law in the United States, since “viability” is determined by neonatology’s success. (As I write this, several states have passed clearly unconstitutional laws that essentially outlaw abortion, with the goal of getting the Supreme Court to reconsider and potentially overturn Roe v. Wade, which established the right to an abortion up to viability.) Premature birth—and which groups suffer from it the most—reflects back all the deep racial and economic injustices that plague the United States.

      And sometimes, the project of treating premature babies reflects what is best and most beautiful in all of us: that we will go so far for a single human life; that some people dedicate their lives to the children of others; that love of all kinds can burn so bright.

      Amol likes to think of Mira having a superhero origin story: She battled the machines and lived. Now she carries hidden power. I sometimes think of it as a fairy tale—the old, dark kind—a girl who had to find her way through a dark wood full of sharp teeth, alone and brave before her time. I think we are both trying to describe how her birth and her struggle feel fundamental: at the intersections of birth and loss, science and humanity.

Part I

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